First off, a tremendous thank you to everyone who donated to our Great Strides campaign this year. Thanks to a late surge in donations, we raised almost $5000 to support the incredibly important work of the CF Foundation. This coming year is going to be big one for CF research, and it means so much to us to have your help in supporting and accelerating these efforts.
The walk itself was fun as always, since it is one of the few chances we get every year to connect with other CF families. As with years past, we left Lemon at home. Some parents do bring kids with CF to the walk, but we haven't yet. Lemon is just too wild, and too interested in other children, so there is no way we could ensure his safety and the safety of the other CFer's at the walk, from an infection control perspective. Maybe someday he will be sufficiently domesticated to bring along, but I'm not holding my breath!
I'm actually writing this post from a hotel room in Minneapolis, so I am not set up to post any photos this week and I will be keeping it brief. On my drive to Minneapolis, I stopped through Rochester to see an old friend. He has children with Type 1 diabetes, which is obviously very different from CF. Yet, it was incredible to see how much of the experience of parenting children with a chronic health is the same regardless of the exact condition. The endless battles with insurance companies, the prescriptions that are from multiple pharmacies and never synchronized, the challenges dealing with schools, and worries about the future. Surely there must be a better way to do all of these things?
I also feel like there may be a missed opportunity in terms of connecting with parents of kids with other health issues. I've built a nice network of support through in the CF community, but the community is pretty small and limited by the fact that we can't really get together in person. There are lots of organizations out there, but (as far as I know) they are each focused on one disease. In this connected age, it should be possible for us to link up somehow...
